286 Water St., Key Plaza 7th
Augusta, Maine 04333-0011
Problem: While Maine is experiencing increases in the number of children and adolescents diagnosed with Autism Spectrum Disorders (ASDs) early diagnoses lag behind the known increase in prevalence. Limited resources and a lack of appropriate infrastructure have hampered efforts to improve early diagnosis, which has led to delays in families accessing early intervention services. Maine is proposing a comprehensive restructuring of its infrastructure through strategic partnerships designed to improve and increase public and private roles to improve early diagnosis, referral, and appropriate treatment.
Goals and Objectives: Goal 1: Improve public health and social service capacity for screening and referral of children with ASD. 1.1 Develop standardized screening and referral for the initial identification of possible ASDs in young children. 1.2 Adopt standardized screening and referral protocols for public health nursing and home visitors to use for initial identification of possible ASDs in young children. Goal 2: Expand the role of private medical providers in screening, diagnosis and treatment of ASDs. 2.1 Expand the number of family physicians, pediatricians, nurse practitioners, and other medical professionals using universal screening and referral tools and protocols to identify children with possible ASDs. 2.2 Improve and expand the availability of diagnostic and treatment services for children and youth with ASDs by qualified medical practitioners. 2.3 Improve the capacity of primary and specialty provides to address the ongoing treatment needs of children and youth with ASDs, including underlying medical conditions and ongoing preventive and medical care. Goal 3: Expand the capacity of families to advocate for and ensure appropriate services are provided. 3.1 More than 200 families of children with ASDs will have been trained regarding “medical home” model of care, and how to interact with medical providers and advocate or their children’s needs. 3.2 Parent organizations will have expanded their capacity to provide information related to screening, referral, diagnosis, and treatment to families in Maine. Goal 4: Conduct pilot studies to evaluate the effectiveness of new protocols for early identification and referral to early intervention services, and for improving access to medical homes for children and youth with ASDs. 4.1 Conduct pilot studies in multiple locations with developmental pediatricians and Child Development Services to evaluate process for referral and evaluations, and field test algorithm developed to streamline early identification and access to early intervention services. 4.2 Conduct pilot studies with two medical practices involved in CHIPRA medical home study to model enhanced care coordination services for families with children with ASDs. Goal 5: Improve surveillance and service system date related to the identification and care of children and youth with ASDs for use by policy-makers. 5.1 Develop a comprehensive data system to track screening, diagnosis, and referral results reported by medical practitioners, HeadStart, WIC, public health nurses, and home visitors. 5.2 Utilize data from ChildLINK, educational systems, MaineCare and other sources to better evaluate prevalence of ASDs.
Methodology: The proposed methodology will build upon existing system change initiatives designed to improve the State’s infrastructure for improving early diagnosis and referral of children with ASDs. This project will be lead by the State Development Disabilities Council, which is currently leading a combined effort by multiple agencies to address this problem. In order to implement these broad-based outcomes, we are proposing a series of specific goals and objectives that will be used as the roadmap for implementation. Stakeholders include individuals with ASD, family members, private providers, State agencies, and advocacy organizations. We will accomplish this by including representatives in workgroups, and asking for input from the Advisory Committee, Steering Committee, and public commenters at regular intervals during the project. Plans can thereby be adjusted to have the most meaningful impact. Work and decision-making will be transparent to all levels.
Coordination: Maine has created a strategic partnership between public, private, and parent organizations to address these issues. Partners included in this effort include the Maine Center for Disease Control and Prevention (applicant), the Maine DD Council (project lead), the Maine Department of Social and Health Services, University of Maine Center for Excellence in Developmental Disabilities, The Maine Chapter of the American Academy of Pediatrics, various private physician practices, The Autism Society of Maine, and the Maine Parent Federation.
Evaluation: We propose a multimodel evaluation strategy tied to each of the project’s goals, involving tailored pre- and post-intervention surveys (via mail and online),using validated and tested survey instruments. We propose to monitor screening, diagnosis, referral, and follow-up systems using the ChildLINK system.
Annotation: Improve Maine’s systems for screening, diagnosis, and service delivery to families with children that have ASDs through strong coordination efforts between public, private, and family partnerships. Create new protocols and tools for improving screening and referral and implement a “systems approach” to training providers and parents. Create pilots to demonstrate improved service delivery systems.